Video 6:40
NDIS meetings focus concerns on those missing out

Lisa Whitehead
Thu 15 Nov 2012, 8:20 PM AEDT

Meetings in the pilot site regions for the National Disability Insurance Scheme have raised concerns around who might miss out on vital services.

Transcript

LEIGH SALES, PRESENTER: The Federal Government has trumpeted a National Disability Insurance Scheme for the disabled and their carers, but before it's even started, questions are mounting about how much it'll cost and who it'll cover. The scheme was hailed as a win for the disabilities sector because it would hopefully give people more certainty about lifetime care and support. But as the Government juggles to achieve a budget surplus, it's under increasing pressure to find more money to expand the scheme so people in need don't miss out. Lisa Whitehead reports.

LISA WHITEHEAD, REPORTER: Despite the physical challenges they face in getting here, people with a range of disabilities have come to this meeting to make sure their voices will be heard in Canberra.

???: We may end up with something that might not be set up the way that it should be and we'll be told to like it or lump it.

LISA WHITEHEAD: Their lives will be directly affected by the Government's new National Disability Insurance Scheme, or NDIS, and they want some answers.

???: Is everyone going to be assessed properly? Is everyone gonna get the funding that they need?

LISA WHITEHEAD: They live in Victoria's Barwon region, one of the five sites that will launch the NDIS next July. If they're assessed as having a permanent, significant or profound disability, they'll be among the first 10,000 Australians to start receiving NDIS support.

JENNY MACKLIN, MINISTER FOR DISABILITY REFORM: Talking about doubling the size of the disability care and support budget by about $8 billion. So there is going to be a very, very significant expansion in the amount of care and support that people get.

LISA WHITEHEAD: But there are concerns many disabled Australians will miss out.

Lucy Carpenter, who's 10, has albinism and very low vision. She lives in Ocean Grove, near Geelong, where the NDIS will be trialled. Her parents were eagerly awaiting the scheme, but now fear she'll be excluded.

ERIN CARPENTER: I work, my husband works, we pay our taxes, you assume that your children are going to get the help that they need. And to find out that she may be excluded from this or probably going to be excluded is pretty disheartening to hear that.

LISA WHITEHEAD: The visual aids Lucy Carpenter now uses have been donated and she relies on an unpaid volunteer to help her in the classroom.

LUCY CARPENTER: She helps me a lot with my learning.

LISA WHITEHEAD: Lucy Carpenter isn't classified as legally blind so her disability may not meet the severity threshold under the NDIS. And it's still unclear if she'll qualify for early intervention support under the scheme.

Professor Ron McCallum from Vision Australia says people with very low vision like Lucy Carpenter could miss out despite having the same functional needs as someone like himself who's legally blind.

RON MCCALLUM, VISION AUSTRALIA: I can't use a computer unless I use a synthetic speech output. For a person of low vision, they also may not be able to use the computer. What they would need would be vision enhancement of the scheme. Why should they be treated any differently from me?

LISA WHITEHEAD: As the eligibility rules of being finalised, disability advocates are lobbying the Government to expand the scheme. But Andrew Baker, an analyst with the conservative think tank the Centre for Independent Studies warns it's already facing a cost blowout.

ANDREW BAKER, CENTRE FOR INDEPENDENT STUDIES: The National Disability Insurance Scheme will be extremely large and extremely expensive. So it's essentially another Medicare.

LISA WHITEHEAD: Under Freedom of Information, Andrew Baker acquired the Australian Government actuary's report on the NDIS. It reveals the cost of the NDIS is set to blow out by $7 billion. The Productivity Commission estimated if the scheme was rolled out two years ago, it would cost $15 billion a year, but Government actuary revised that up to $22 billion in 2018 and predicted an extra 30,000 people would be included in the scheme.

ANDREW BAKER: The Productivity Commission's estimates are based on 2009-'10 figures and they did not take into account price inflation, wage increases or population growth from 2009-'10 to 2018-'19 when the scheme will be fully operational. ... The public has been misled to the true size and cost of the NDIS.

LISA WHITEHEAD: The Federal Government denies it's a cost blowout. It says it's standard practice to do the costings in today's dollars when looking at long-term reforms.

Another factor that has enormous cost implications for the NDIS is the pressure to include people who acquire a disability over the age of 65. The Productivity Commission recommended those older Australians be excluded and be looked after in the aged care system.

HELEN BENGE: That I think is a bit discriminatory.

LISA WHITEHEAD: Professor Helen Benge is 86. She has poor vision caused by macular degeneration and falls into the group of older Australians likely to be excluded.

JULIE HERAGHTY, CEO, MACULAR DEGENERATION FOUNDATION: There is an artificial line at 65 that says somehow this will be provided in the aged care system. It really is unrealistic, and it really, for the very best of intentions, I think is just not going to happen.

JENNY MACKLIN: We have heard very strong alternative points of view. So we're thinking about these issues and taking their points of view very seriously, but there's a lot of work that needs to done before we make a decision.

LISA WHITEHEAD: Andrew Baker says if the Government fails to resist pressure to expand the scheme, it could put its financial sustainability at risk.

ANDREW BAKER: In the interests of people with disability, their carers and families and in the interests of the taxpayer, it is incredibly important to make sure that those who receive disability supports from the NDIS are the ones who need it most.

LISA WHITEHEAD: In the lead-up to the next federal election, the Government will have to make some hard decisions.

ERIN CARPENTER: All we've ever wanted is a fair go for Luce to be able to have every opportunity to be not disadvantaged and under this new scheme at the moment it doesn't sound like that's inclusive of all the people that should be, really.